Wait… What?!

So on Friday I got a letter from my hospital. I get so many of these things.

I open the letter on Friday evening, assuming it’s going to be a post-admission letter. Or perhaps a letter telling me about my clinic appointment on Wednesday. It said:

An appointment has been arranged for you to have: US Guided FNA Biopsy Neck

Sorry, what?
I read it again.
My neck?
Biopsy of my neck?
I google it.

ULTRA SOUND GUIDED FINE NEEDLE ASPIRATION BIOPSY NECK

Wait, what? Who’s neck? Doing what?!

I opened it at 8pm on Friday evening. Well after anyone I could contact about it had gone home . I send an email to my nurse specialist.

Hi,
I just received a letter saying I have a ‘US Guided FNA Biopsy Neck’ on November 27.
Do you know about this? Do I have cancer in my neck? What’s this about? I obviously just had a biopsy of my face… I didn’t realise there was an issue with my neck… Was there a lump found that needs a biopsy? This is all news to me, I’m obviously freaking out a bit.

It felt mad that I had to send this email. Obviously the fact that I was having the biopsy last week was also broken to me in a pretty bad way… but this seems insane.

I’m not one to jump to conclusions. I’m not one to assume the worst. But I’m not sure how you’re supposed to take a letter saying you’ve got something in your neck that needs biopsying.

See, I’ve been sure it’s just an infection. I’m certain I’ve had an infection in my implant for the past few months. The fact that there’s a lump in my face is more scary. Plus I can’t see properly out of my eye… that’s really worrying. And my face is swollen. There’s absolutely a chance it could be an infection AND cancer. But there’s no point in assuming that until I know. I hope for the best.

But when you’ve been telling yourself it’s an infection and then suddenly you’re being told there’s something they’ve found in your neck they want to stick a needle in to check if there’s cancer there too… well… that’s a bit confronting, isn’t it. That shakes things up a bit. I felt in control of what’s been done to my face, I understand why we’re doing it. But what is in my neck?

So was it cancer in my face after all? And has it spread? To my neck? Who even requested the biopsy? What even triggered it? Was it in one of my scans? Was it the one two weeks ago? Was it the one I had on the day I left hospital? They sent out the letter the following day…

I put it to the back of my mind over the weekend. And I really did, I had a quiet, relaxed weekend. But of course the thought was still there. The letter still sitting on my dining room table.

Can we also just appreciate for a moment that I’m terrified of the thought of having a needle shoved in my neck while I’m awake? Not to mention what it is they’re looking for…

A couple of people suggest it might be a mistake. I feel like it’s unlikely but I guess it could be…

My friend reassures me by saying that osteosarcoma spreads through the blood, not through the lymph nodes. I repeat it to myself like a mantra. Blood not lymph, blood not lymph.

On Monday afternoon I got a call from the nurse specialist.
He seemed confused what I was asking in my email. So I start again.
‘I just got a letter on Friday saying I’m booked in for a biopsy of my neck… what is this about?’
‘Oh that’s just an Ultrasound FNA, that’s just a scan.’
‘It’s not a scan, it’s a biopsy.’
‘It’s an Ultrasound FNA. Don’t worry, it’s just a routine scan.’
I am confused. Does he not know what ‘FNA biopsy’ means? It is definitely not just a scan. I try another route.
‘Was something found in my neck in one of the scans that they need to check?’
‘No, we haven’t even got the results of your biopsy from last week yet.’
I’m confused again. The biopsy of the bone at the bottom of my eye socket surely wouldn’t trigger a neck biopsy, even if it had come back as cancer. What is he talking about.
‘So there’s nothing in my neck that has triggered it?’
‘We’re just covering all bases and doing a plethora of scans just to be safe.’
‘But it’s not a scan, it’s a biopsy. There has to be something it’s biopsying. It can’t just generally biopsy my whole neck… There needs to be a specific spot they’re targeting for the biopsy.’
‘No, it’s nothing like what you had to your eye last week, it’s just an ultrasound FNA.’
I realise I’m not getting anywhere. And I don’t think I’m going to.
‘You’re coming in on Wednesday right?’ He says, ‘We can talk about it then.’
‘Ok’ I say, and I hang up the phone even more confused.

Does he not know what an FNA biopsy means? I definitely do. And it absolutely involves sticking a needle into your neck to draw out cells from a certain spot to see if they are cancerous.
It can’t just be going into nothing… Something must have triggered it…
Is he being intentionally evasive because he doesn’t want to tell me something is wrong?
Does he think sticking a needle in someone’s neck to take out cells to check for cancer is ‘just a scan’? If so, he is very out of touch with what counts as a scan and what counts as a painful, invasive procedure.

WHAT IS GOING ON! IT’S MY BODY, WHY WON’T ANYONE TALK TO ME.

These days feel frustrating. I eat chocolate and take multiple baths. I like baths.

3 Comments Add yours

  1. Rob says:

    I had one of those as part of the battery of tests before starting chemo, as they saw that one of my lymph nodes looked swollen in one of the scans. Yes, definitely a needle into the neck – I think that they gave a local anaesthetic before the procedure. It was all explained to me by the oncologist *before* the procedure, though – including that it could just be an inflammation in sympathy with everything else that was going on in the surrounding area. There were no bad cells found in mine, so presumably that was the case. I had a sort-of dull ache at the site of the biopsy for a day or two afterwards.
    If you do have an infection in your face, then my non-medical opinion would be that you might have a lymph node that is getting inflamed whilst trying to help deal with the infection, but that they are checking it for cancer just to be on the safe side.
    How the CNS can describe it as just a “scan” is beyond me. And how the procedure could be booked for you without telling you anything about it is ridiculous – how do you know if the scan is even meant for you? Maybe the person making the booking did it for the wrong patient (I have experienced this as well). It’s an invasive procedure, so I’m not sure that the doctor who is assigned to undertake it would even do it if you told them that you don’t know why you are having it done – informed consent is required for all procedures, even non-invasive ones.
    I really don’t know what is going on over there…

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  2. john kirby says:

    Hi Jen, thats not nice. I hope and pray there has been a mistake. I am waiting anxiously for your news tomorrow Wednesday.

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  3. SharLar6074 says:

    It’s a mindfuck for sure (excuse my language). They should never just schedule a procedure without discussing it with you beforehand! I know they pretty much did the same with your biopsy on your face but really? Does your surgeon not go over your scans with you? At least read the written report with you? I would definitely make a few more calls on this and let someone know it’s not right. Only if you have the strength for dealing with multiple phone calls. I hate calling doctors, etc. You can never get through to the right person easily!

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